Newspaper article on Occupational Therapy and Hoarding

Great to see more focus on mainstream media on hoarding and Occupational Therapy

https://www.theguardian.com/careers/2018/aug/31/hoarding-the-possessions-are-almost-part-of-them

New published research on Occupational Therapy and Hoarding

I  am  pleased to  say  that  finally there is  some published  research  out  there which  is  specific  to the  role of  OT in  managing hoarding, which I  carried  out  with colleagues.  Although there are still  many  other areas to  explore,  it hopefully  represent a  starting  point  in  establishing how occupational  therapy  can   best  support those  affected  by  hoarding  issues.

Here's  the  reference;

Dissanayake, S., Barnard, E., & Willis, S. (2017): “The emerging role of Occupational Therapists in the assessment and treatment of compulsive hoarding: An exploratory study”. New Zealand Journal of Occupational Therapy, 64 (2) 22-30.

Assessment Example

In order  to  demonstrate  how an  OT  approach  may  be used  in  assessment,  I  have  taken  an  example from  a  short   film  and listed  the  occupational  strengths  and  needs  of   the  individual  using  a  MOHOST  framework.  I  will probably  post  a    narrative  case  formulation  at  a  later stage. I  am  sure there  are  other  observations and  points  that  can  be   included   but   it  gives  you  a  general  gist of  what an  OT  assessment  of  the    situation  could  look like. As always  any  questions  or   feedback  is very  welcome.

The   film  is  found  here    https://vimeo.com/603058  
-  the  particular excerpt  I've  used  is  called  "Abandon"    which  is   the  final  segment  starting at  14.45 min

DOMAIN	OCCUPATIONAL STRENGTHS	OCCUPATIONAL NEEDS
Volition /Motivation -Appraisal  of  ability -Expectation  of   success -Interests -Choices	Indicates  desire  to change “I  wish  I  could  be  more  organised” Has  achieved  success  with  clearing  in  the  past Aware  that there  is  a problem   with  his  behaviours  and  habits “There’s something  lacking” Wants more  social  contact Has  various interests  such as  music, video and  maps,  photograph  indicates   he  has  travelled Faith  appears  important  to  him	Fluctuating   motivation  to change  and  cope with  challenges “Sometime  I  think  what  the  hell I live  on   my own” Previously struggled  to fulfil goal  of  inviting his  mother  to  his  flat which   he  regrets Appears to  have  difficulty  engaging  in  goal  directed   behaviour and making  choices “I  look  at shelves  from  top  to  bottom” Appears to  struggle  to  maintain   control  over   his  interests  e.g  buying  books and  maps  in  spite  of  limited  space  to  keep them- does  he  have  the  finances to  pursue  this  interest? Limited  self  efficacy   regarding  tackling the problems  “There’s something  lacking”
Habituation/ Pattern  of  Occupation -Routine -Adaptability -Roles -Responsibility	Maintains  a  work role which  he  took on after the  death of  his  mother Evidence of  some basic self  care  Appeared to take some  responsibility and  change his behaviour  in  the past by  trying  to  clear  his  flat	Struggles to  make  time  to  maintain  a clear   and  hygienic  home environment  which he  attributes  limited  time   due  to  work  role Difficulty  with  maintaining    routines  around  domestic tasks     Loss  of  role of  son    and  greatly  misses his   mother -loss of previous  routine of  visiting  her Has struggled to  adapt  to  smaller flat
Skills -Communication skills Non  verbal skills/conversation /vocal  expression/ relationships --------------------------------------- -Process skills Knowledge/timing/ organisation/problem  solving --------------------------------------- -Motor skills Posture/mobility/coordination/ Strength and  effort /energy	Able to  communicate  his needs   Appears  to  have  skills  to  relate  to  others ------------------------------------ Evidence  of   some maintained   areas  such   as shelves  containing  records and  videos ------------------------------------ Independently  mobile Fine  and  gross motor  skills appear  intact in order  to  fulfil  occupational roles  and  tasks  relating to  maintaining  a  cleared  environment	Speech  slightly  pressured and  repetitive Historically  the  state of   flat has  impacted  on  his   relationships  with  women of which he  appears  regretful and  preoccupied   Hoarding  appeared to  impact  on  the  relationship  with  his  mother “What  am  I  going to  do  with  you” ------------------------------------- Inefficient  way  of   searching  for objects  Disorganisation  of all  objects  leading  to   difficulties and  delay  locating items  “churning” Appears  to  give  up  easily  when  faced   with  problems- difficulty  arranging  repairs --------------------------------- Appears  easily  fatigued  (e.g  sweating and  breathless) Repetitive bending and inefficient  searching   may  lead  to  injury and  increased   fatigue
Environment -Physical Physical space/physical  resources --------------------------------------- -Social Social  groups Occupational  demands	Some areas  accessible and   organised in  categories ------------------------------------ Evidence  of  at  least   one  friend  who   he  can  rely  on  for   financial  support	May  have  limited  funds e.g   asks  friend for  money Some areas  of flat appear inaccessible such  as   part  of  living   room  and  bathroom ( cleans  teeth  in kitchen),  no  evidence  of  a  bed Dust   and  mould   and  piles of  objects presenting  environmental  health risk    to  self  and  visitors Potential  fire risk- papers  near  heater (?working) Many objects  in poor state  of  repair  and   repair  men  refuse  to  enter Many  items  are  not   easily  available  to  be  used  for  their   intended purpose ------------------------------------- Condition of  flat  has severely impacted on  social  contact  and practical  support  at  home Appears  to  struggle  with  occupational  demands  of  both  maintaining  his  home and  his  work role  at  the  same  time. Financial demands  of  his   hoarding  habit possibly in excess of  his available funds

Tips for organising

As  OTs  we  would  tend  to   focus  on organisational  skills.  Here  are a  few   tips   which  people  have  found  helpful. Please  comment   with  any  additional ideas  which  are  not  on  the  list.

Tips  for  sorting  and  organising

Before  you  start

·         Before  you  start   try make  categories-  these  could  be   very   basic  eg  1)  Things  let  go  of  2)  things  to  keep.

·         If  you  are  making a longer list  of  categories  of   things  to  keep-   make  sure  you   list  where  you are   planning  to  store them. E.g Books- large  bookcase in living  room.

·         Some people   label  drawers  or  cupboards with  categories to  keep  focussed  while  sorting.

·         Try  to  identify  the  items  or  categories  which  are most  important  you  and  the  items  which  are  less   important.

·         Identify  a few very  important things (VITs) eg  passport ,  bank  card   and  make  sure  that  they  are kept  somewhere  you  can  find  them.

·         Make  a  list  the  tasks   you  need  to  do  and  rank  them  in order of   easy  to   difficult.  Start with the  easy  tasks  first.

Develop  rules for   sorting

The  rules  will  depend  on  the  individual’s  situation.

Some  examples;

·         -OHIO -Only   Handle  IT  Once

·        - One  in  two  out etc (If  you  bring   one  item  into  the  house  discard  two)

·         -Only  keep   something if  you know  you   are  going to or  have  used  use it  in  6  months/  one  year etc.

·        - What’s  cleared   stays  cleared

·        - Don’t  bring  in  things  to  give  to  other  people

Develop  a  list  of   questions  to   ask  yourself   when you are deciding  what  to keep you  may  want  to  put  them somewhere  you  can  see e.g

-Do  I  already  have  one  of  these?

-Do  I  have  time to   use  it ?

-Do  I  have  space  for  it?

-Have  I  used it  in  the past  year?

-How  does  it  compare  with the  things I  value  highly?

-Does it  seem  more important  because   I am looking at  it  now?

Establish a  routine around clearing

·         Identify   times  of  the  day   when   your   concentration  may  be  better and try  to  start   during  these  times.

·         Identify  a set  time  for  sorting.

·         Start  with   shorter periods  first - even if  it is   10  minutes  and slowly  build  it  up.

·         Some people  set an  alarm  to  time  them  while  they  are  clearing.

Keep  organised

·         Avoid  re-populating  areas you  have   already  cleared unless  it  is  a  temporary  “staging” area  for  sorting .If  appropriate you could fence  off    cleared areas   for a  short  time  e.g a  desk  or   a   corner  as  temporarily   “no  go”.

·         If  there  are  a lot of  things that  need   organising   think  about 4  or  5   key  categories that  you keep  maintained  whatever  happens e.g  laundry,  recycling ,  washing  up and post and  make  sure  that these  are  kept  in  order  on  a daily  basis.

·         If  the   floor  is  covered   in    objects  think  of  putting  them  in  a  box   first   to  create   more  floor  space  and  sort  from   the   box.

·         Try  and   make  sure  the   objects    to  be  sorted  are  at a  reachable  level to minimise repetitive  strain   of reaching  .

Keep  focussed

·               If  you  have a  clear  idea   how  you   would  like  your  place  to  look –plan  it    out   in  your  mind  as  carefully  as  possible.  Draw  a picture  or   find  one  of  a place  that  looks  similar   and  post  it   where  you  can  see  it

·         Decide  on  the  area  or  category  you are going  to  sort  and stick to  it.

·         Consider  covering  areas  that  you are not  working  on with  a  sheet so  that  you  are not  distracted by  other  areas  you  have  to  clear.

-          Use a brightly  coloured piece  of  card or   cloth  to   identify  the  area  you  need  to  clear,  ideally  choose  a  colour  of  your   choice  which  either  makes  you  feel  calm or  motivated.

·         Working   with  your  back  to   the  areas  you  are not  working on  so   you  don’t  get distracted  or   overwhelmed.  

·         Finish   one  task properly  before starting  the   next  task.

Keep    motivated

·         If  you  have a  clear  idea   how  you   would  like  your  place  to  look –,plan  it    out   in  your  mind  as  carefully  as  possible.  Draw  a picture  or   find  one  of  a place  that  looks  similar   and  post  it   were  you  can  see  it.

·         Keep a  record  or  diary  of  what  you  have  achieved each  day    so   you  can  remind  yourself  of  your  progress.

·         Tell someone   what  you are planning  to   do - sometimes  talking  about  it   makes  it  more  likely  to  happen.

·         If  appropriate   identify  someone   who  will help  motivate you - you   should  feel  comfortable with  them.  Agree  together  the  best  way  of  helping you  such as  being  with  you,  helping  you  carry  or  giving  you  an encouraging phone  call.

·         Link up  with  others   who  are in a  similar  situation to  help   motivate you. Consider  social  networking sites  such as “Help  for  hoarders”  where you can  share  your  progress  and  challenges  and tips  with   others.

·         Some people  find  listening  to music  helpful while  they  clear.

·         Take  a  photograph  of  your  possessions  and  have  a look  at  the  photo  both  in  and  out  of   your  home-  sometimes  looking  at  it   in a  different  environment  can  give a  new  perspective.

·         Think  of  a symbol or mantra or picture  that  will help you achieve  your  goals-  you  could  post  it   around  the  home around  to  remind  you.

·         Making  it   fun  -roll  a  dice  for  the  day  and  let   go   or  as  many  items  as the   number .

·          If  it  is  hard  to  get  going  think  about   a  five  minute   mini-  challenge  to  get   quick  results for example

-        Pick  up   all  the  pens  you  can  find   and only  keep the   ones   that   are  working

-       Collect or  your   loose   coins lying  and put  in  collection  box  or for  charity

-       Sort out   your  handbag  or   main  bag  -  weigh   it   before  and  after

·         Reward  yourself  afterwards .

Sources  of  information

No  more clutter- Sue Kay

Buried In  Treasures- David F  Tolin; Randy O Frost; Gail  Steketee (2d  Ed)

Digging Out-Michael  A  Tompkins;  Tamara  A.  Hartl

Help for  Hoarders website

Capacity to Do

I wrote   an  earlier   post about   hoarding  in  relation  to  the  Mental  Capacity  Act  (2005)  which  is  used  in  the  UK  to  assess  an  individual’s  ability  to make  a decision about  a  specific  course  of  action  if  there  is  an  indication  of  a  disturbance  of  the  mind  or  brain.

However, what  the  Act  does  not    describe adequately is  an  individual’s  executive  capacity i.e  the  ability  to act   on a  decision. This  has  been   identified  as  being  important      when  considering  areas  such as  hoarding  and  self  neglect (SCIE, 2011).

To clarify  what  is  meant  by  the  term. Naik et al (2008) describe  decisional capacity as

…“the  process of  making  decisions for  oneself or  extending that power  to  another  individual” p.27

In  contrast executive  capacity  is  described  as ;

“ the  process  of  putting  one’s  decision into  effect either  alone  or by  delegating those  responsibilities  to  another more physically  able  individual” p.27

 I  guess  in simple terms, executive  capacity  is concerns the   ability  to  walk  the  walk in  contrast  to  talking  the  talk (decisional capacity).

It  has  been  argued that when  assessing  capacity particularly in relation  to  self  neglect,   decision  making  capacity  is  often  given  more  attention  than  executive  capacity (SCIE, 2011).  However, some  people may  have  decisional  capacity  but   lack  the   ability  to  put   their decisions  into  action  due  to  executive  dysfunction.  Naik  et  al (2008) therefore  argue  is  important  for  professionals  assess both  decisional and  executive  capacity   when     planning  care  for   adults at  risk of  self  neglect.  The  same  authors  describe an “Articulate-Demonstrate “ approach  to  capacity  assessment. This   may  involve  a  combination  of  standardised    assessments including  psychometric and  OT  assessments  and  more  individualised observation  of clients'  day  to  day  functioning. The authors argue  that  OTs  and  Nurse  Practitioners  are  in a good position  to assess  abilities to  carry out  agreed  decisions  in  areas  such as  managing medication,  maintaining  personal  care   etc   with  or  without  additional  support.

In  relation  to  hoarding, research  has   identified  that  people who  hoard  are more  likely  to  have problems   in  executive  functioning  such as problems with  categorisation and  decision making, reduced  concentration  and  increased  impulsivity   ( eg Hartl et al 2004; McMillan  et al 2012). This  can result in problems such as accumulation of  excess  clutter and  behaviours  such  as  “churning” whereby  the  hoarding individual   picks  up  an  item   from  a  pile  and  cannot  decide  what  to   do  about  it so puts  it  on another  pile , meaning that  the  pile  of  clutter  just  moves   from  one  area  to  another.  (Tolin  et  al, 2014)

To  give  the  following  case example.

 I  have  been  working  with  an older  age   client    who  was  diagnosed  with  Alzheimer’s   disease  about  a  year previously and  presents   with moderate cognitive  impairment.  She  is  however  very   articulate  and is  keen  to maintain  her  independence .  She  has  always   lived  alone  and  is  fiercely independent . On  assessment   it  appears   that  she  has  had  long  standing  hoarding  traits,  but  these  have  worsened   due  to  recent   cognitive  decline. She  lives  alone  in  a  cluttered   studio flat  but  can  just  about  negotiate  her  way to  key  areas  of  the  flat  such as the  kitchen and  the  bathroom  sink  and  toilet  but  often  has  to  move  items  out  of  the  way  as  she  moves  around.

She  has  had  falls  and there  is an  ongoing  fire  risk  as  areas  on  her  floor  are  covered  with  piles  of  paper. She  recognises  that  there  is  a  risk  should  her  environment become  more  cluttered,   but  she  is    keen  to address  this  issue  herself.  Over the several  months  I  have  known  this  client,  I always  arrive  to  find  her  busily working  through  piles  of  paperwork  which  never  end  up getting  filed or  organised  in  a  systematic  way so  the  piles never  reduce just  move from  place  to place  ie “churning”. Although  she  has   been very  careful  in  the past about  ensuring  she  pays  bills  on  time,  she  has  started to experience difficulties  managing finances, for  example writing  out  a cheque for  a bill  but  forgetting  to post  it. Her  bathroom floor  is  full  of  clothes  that  were  taken  to  the  laundry but  not  put away, so they  have  subsequently  become  dirty  again and lie in piles  waiting  to be  washed  again. In  summary  she   now  struggles  to  carry  out goal directed actions  through a  series  of  stages.

In  discussing  the  situation   with the  client,   it  appears  that she  has  the  decisional  capacity to  understand  the  risks  associated  with the  clutter  in  the  flat.  However  she  lacks  the  executive  capacity to  manage the  build  up  of  clutter  without  support.

Having   become  more  aware of the  concept of  executive  functioning in  relation  to mental  capacity  relatively  recently, I  think  there  are  two  clinical main implications relating  to  OT   practice.

•     For  OTs  carrying  out  capacity  assessments (as  with  other  members  of the MDT),  executive  capacity  as  well as  decisional  capacity  should  be  highlighted when considering areas of  self  neglect  and  hoarding.
•      In  considering  the  role  of   OT  for hoarding,  there  is  potential  role for  OT  in  carrying out  standardised and   non-standardised  assessment  of  functional  abilities (executive capacity)   to  help clarify  an  individual’s  mental capacity regarding  actions  to  manage  hoarding.

As  always  any  thoughts  or  comments  are  welcome.

References

Hartl, T.L., Frost, R.O., Allen, G.J., Deckersbach, T., Steketee,G., Duffnay, S.R. & Savage, C.R. (2004). Actual and perceived memory deficits in individuals with compulsive hoarding. Depression and Anxiety,20, 59-69.

McMillan SG, Rees CS, Pestell C (2013) An  investigation of  executive  functioning, attention and  working  memory  in  compulsive  hoarding,  Behavioural  and  Cognitive 

Psychotherapy, 41, 610-625.

Naik, A.D., Lai,JM and  Dyer,CB (2008) Assessing  capacity in  suspected  cases  of  self  neglect. Geritrics, 63 (2), 24-31  accessed  online http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2847362/

Social Care  Institute  for  Excellence (SCIE). (2011) Adult  Service  CSIE Report  46 “Self neglect  and  adult safeguarding: findings  from  research” p-26-38 accessed  online http://www.scie.org.uk/publications/reports/report46.asp  

Tolin,DF; Frost, RO and Steketee, G. Buried  in Treasures: Help for  Compulsive Acquiring,  Saving,  and  Hoarding (2014) 2^nd  Ed. Oxford  University Press 

Suggestions for OT-based research topics

I get contacted from time to  time  by mainly students looking to  do projects/dissertations on OT and hoarding. This is fantastic and hopefully will gain momentum  to lead to published research and an evidence base for the profession. Basically the door seems wide  open in terms of research  needed into OT and hoarding , however I've put down a few thoughts below of  questions /areas that  could  be explored and developed further. Please  feel free to add other  suggestions for research topics.


- Potential use of  OT models - how do they relate to the current  evidence base? Is there a need for a specific model  in OT?

- Are OT interventions  cost -effective?

- Interventions focussing on restructuring of roles and routines and the evidence base for these?

-Are  OTs  too   focussed on the physical environment  when  working  with people who hoard?

- Are there certain hoarding traits or behaviours  which OTs are well placed to  work with?

-S.User/family experience   of OT interventions


Lets hope  we'll  be able to answer some of these questions  further down the line

Has anyone used the KAWA model?

I'd be interested to know whether anyone has used the KAWA model in the assessment/ treatment of hoarding. It  looks like a potentially  useful way of establishing  clients' perspectives and priorities as well as establishing more of a therapeutic rather than directive  relationship. So would be great to hear about  any clinical   experiences. Obviously if I get the chance to use it  myself, I will keep you posted.